This morning, Anastasia had her eye exam. Again, we
were dreading it, because it's always made her scream bloody murder. But
much to our relief, she handled this exam extremely well. She only cried
a tiny bit, and that was at the very end of the procedure. Better yet,
the doctor gave her the all clear! She won't need another exam until
she's two years old. Yeahhhh!

April 4, 2006

I talked with the clinic this morning about
Anastasia's low heart alarms. They suggested that further involvement
was more in the domain of her pediatrician. They also suggested I should
mention to our pediatrician that the cardiologist knows about the issue
and has suggested using a heart monitor to see if they can find a
problem. Sooo...something to mention on Friday when we see the
pediatrician.

April 6, 2006

I just discovered something outrageous. I received an
email from a stranger, claiming that someone had stolen photographs off
this website and created their own website on Babies Online, claiming
the child in the photos as her own. (Actually, she claimed she had
twins, a boy and girl, and identified photographs of our Anastasia as
these twins.) The person emailing me offered up screen shots of the
website as proof, and I have no reason to disbelieve her, although the
Babies Online website is now viewable by password only. Needless to say,
I've emailed Babies Online about the infringement, and I expect they'll
not only tear down the site in question, but will ban the user forever
(or as much as is possible).

Clearly only a sicko would create a website about
fictitious babies - one who supposedly died and another who is
struggling for life. This is what's most outrageous - that someone would
create such a story (using Anastasia's photos!) so they could receive
pity from strangers, when there are many of us who've actually had to
deal with the hell of having a baby in the NICU. Such people belittle
real-life pain and suffering by their self-centered, fraudulent actions.

So if there's anyone else out there even thinking
about stealing photographs or text or even a general story line off this
site, let it be known that when I discover you (and I will
discover you; it's impossible to hide on the Net), I'll not only have
your website taken down, I'll sue for copyright infringement and
anything else I can think of, in order to prevent further fraudulent
actions.

April 8, 2006

A few more words about my last post, and then "enough
said!" I've visited the bulletin board where the person in question
posted links to her fraudulent website, and it's clear she was seeking
attention and sympathy. As far as I know, she wasn't seeking donations
of any kind. The most disturbing thing to me, though, was that she used
a birth day photo of Anastasia, with a caption beneath it that said, in
effect, "This is my baby just before it died." It gave me the heebie
jeebies, and made me cry a little. When the photo was taken, Anastasia
was truly struggling to hang on to life. I'm still in the process of
tracking down the offender.

Now, on to more important things! Anastasia had a
checkup with her pediatrician on Friday, who seemed pleased and
surprised at how much she's grown. (She now weighs 13 lbs. 13 oz., and
is eating much better.)

Poor Anastasia began wailing the moment I started
undressing her for the exam. Big tears fell down her face until we had
her safely back in the car. I think she thought she was going to get
another of those painful RSV shots.

The pediatrician spoke with a cardiologist about
Anastasia's low heart rate alarms, and both of them felt it wasn't
anything to be concerned about, but since another MD and cardiologist
were surprised and concerned about those alarms, we decided to go ahead
and have Anastasia wear a diagnostic heart monitor. Next week, we'll
drop by the hospital and get her all hooked up. It's my understanding
that she'll wear the thing for a few days, and then (assuming all is
well) be free of all monitors. I really don't think there's
anything wrong with her heart, but I also believe it's prudent to make
sure my instincts are right!

And now, a photo of Miss Anastasia. I have to say
that she's becoming like her mommy. I used to pout whenever my photo was
taken, and Anastasia has taken to stubbornly refusing to smile when she
sees the camera...The moment I tuck it away, though, she's all grins!

April 10, 2006

This morning, I had a call from a state organization
that does in-home care for children with developmental issues. They'd
been referred by the state nurse who visits us periodically, and who
thought they could help with some physical therapy. Well, after an
extensive interview, they said that Anastasia's development was well
within normal parameters. "Hold on," the woman interviewing me said.
"Let me talk to my supervisor and see if Anastasia qualifies because she
was an extreme preemie." She told her supervisor all of Anastasia's
medical history, to which the supervisor kept saying, "Ooooh, ooooh," as
if she expected this child must have some serious developmental issues.
And then she heard Anastasia's developmental "score." "That's amazing!"
she cried. "Yep," I said, "Anastasia is a miracle baby!" So, in the end,
she didn't qualify for the services because her need for physical
therapy is questionable. But they will be calling again and doing
another interview in two months, to make sure Anastasia's needs aren't
more severe at that time.

Anastasia is still 99.5% bottle fed, but this
weekend, I gave her a taste of some avacado. I figure it's a great baby
food. It's high in calories and "good fat." I mashed it up well and
brought it to room temperature, but when she got some in her mouth, I
soooo wished I had the camcorder running! Her little eyebrows raised
high, her eyes got big, and her jaw dropped. I've never seen her look so
surprised and grossed out. She closed her mouth and few times and tried
to swallow, but finally she spit the stuff out. Ah well, we'll try again
another time!

Speaking of feeding and such, my milk supply has
taken a very sudden and large dip downward. I'm doing all the same
things I always did to keep my supply up, but now I must pump
after each of Anastasia's feedings, or she won't have milk for her next
bottle. I've also had to lower dramatically the amount of milk I put in
each bottle. Anastasia's only getting 1 oz. of breast milk to 4 oz. of
formula per meal. (The doctors say it's important to have a mix of both
in each feeding, as it's easier on her tummy than going back and forth
between milk and formula.) I was debating when to quit pumping, but had
decided to plod onward until Anastasia's first birthday, in August. I
was afraid that if she got sick after I stopped giving her milk, that
I'd blame myself. (Milk has all those good antibodies that formula does
not.) But, it looks like my body may determine that I'm quitting
sooner! It's quite frustrating to pump for 20 minutes or a little
longer, only to get a few teaspoons of milk.

This afternoon, we're taking Anastasia back to the
hospital (!) to have a heart monitor put on. Of course, ever since this
monitor was ordered, she hasn't had a single low heart rate alarm. But
hopefully, the new monitor will pick up at least one dip, so they can
see if it is normal or not. Originally, I thought we'd pop upstairs and
visit the NICU, while we were there. I know there are nurses, doctors,
and others who'd like to take a peek at Anastasia. But Alexei fears
taking Anastasia out in public and having her get sick. So our visit to
the NICU will have to take place on another day (when RSV season is
over).

April 11, 2006

Anastasia now has her heart monitor...in addition to
her apnea monitor. The heart monitor is a lot smaller, though - about
the size of an MP3 player, and has a handful of wires that stick on
various parts of her chest. Anastasia smiled and flirted shamelessly
with the guy who put it on.

She's supposed to wear the monitor for two days, then
we must go back to the hospital, have them download the data, and clear
it. Then she wears the monitor one more day before we bring it back for
good. We're praying that the monitor gets a chance to read some low
heart rates. So far, she hasn't had any alarms (of course!). We want to
give the doctors everything they need in order to either say
"everything's fine" or "something's wrong."

In the meantime, the monitor is a pain. It ties onto
her body, and Anastasia wants to eat and pull on those ties, so I have
to keep her in clothes that cover it up, yet provide enough room for it,
too. It makes burping difficult, also. (I'm back to the NICU way of
burping; putting Anastasia in my lap and leaning her forward, so her
chin is resting in my hand). Tummy time is impossible.

Wearing her heart monitor (black) and apnea
monitor (blue). The heart monitor is in a black cloth bag.

Ready to go to the hospital. The cow is one of
her favorite toys.

April 12, 2006

Eight months ago today, Anastasia was born. Wow. Time
flies! At the end of the month, Anastasia will be five months, corrected
age.

This evening, we take Anastasia into the hospital
again, to have data downloaded from her heart monitor. We won't learn
anything about the results until the testing is all done, but I was glad
(in a way) that yesterday afternoon Anastasia had some low heart rate
alarms during her nap. At least it will give the doctors a look at
what's happening.

April 14, 2006

On Wednesday, we took Anastasia back to the hospital
for a quick switch-a-roo. They took off the heart monitor she was
wearing and replaced it with a new one, to collect new data. Then on
Thursday, Alexei dropped off the second heart monitor. Her heart rated
dropped below 75 three times while she wore the heart monitors; it's
possible there were also times her heart dropped below 80, which is the
threshold most people seem to agree is healthy for babies. We don't
expect to hear anything back until late next week, since the results
have to be studied by a cardiologist at the children's hospital, which
is several hours away from us.

We also just received the call that there's still a
lot of RSV in our area, so this afternoon we're taking our dear one down
for her two shots. Poor thing. (A few of you have asked what the RSV
shot is. Synagis is what it's called, and it contains antibodies that
are specific to RSV.)

In happier news, Anastasia has slept through the
night twice in a row. It's paradise for me, who hasn't had sleep without
frequent or long interruption for eight months!

April 17, 2006

Well, Easter was kinda on the sad side. Alexei was
(and is) sick with a sore throat and a fever, so he's sequestered away
from us, and of course we couldn't do any of the usual Easter stuff,
from church to family gatherings, because Anastasia and I are generally
sequestered, anyway. But Easter is all about the greatest
miracle, so it's tough to be sad for very long. And I spent all day with
one of the "littler" miracles, dressing her up and watching her have fun
with the Easter basket and stuffed animals her grandma brought over.

April 17 (part II)

Several people have emailed and asked whether
Anastasia is continuing to sleep through the night. The answer is no.
She did it twice, then reverted to her old ways! :)

April 19, 2006

Yesterday, we received the written report from the
cardiologist who checked Anastasia's PDA (heart murmur). Since we'd
already talked with him, there was no news there, but I delighted in one
of his phrases: "This little baby has done remarkably well given her
prematurity." The doctors can't say it often enough for me: Anastasia is
astonishing. I'm so proud of her, and so thankful to the Lord.

In other news, Anastasia is trying to sit up.
Yesterday, I put her in the bouncy seat and carried her into the kitchen
while I cooked. As I carried her, she craned her neck to see her daddy
(still sequestered in the living room), sitting mostly upright. Since
the bouncy seat is not fully reclined, I can't quite say she sat up on
her own, but this was a first step!

April 20, 2006

I apologize if yesterday's post was confusing. I was
referring to the written report for the echo Anastasia had several weeks
back, checking on her PDA. It had nothing to do with the recent heart
monitor she was on, and the results from that study.

But I did hear back on that study today. The
results were sent to a pediatric cardiologist, who proclaimed Anastasia
just fine. They can see no abnormalities in her heart. When I asked why
Anastasia might be having low heart rates, then, the reply was, "Well,
most babies aren't on monitors, so their parents would never know their
heart rate was dropping in deep sleep. She's sleeping soundly, and her
body just doesn't need for her heart to be beating quickly." Our
pediatrician then asked how we felt about taking Anastasia off her apnea
monitor. I thought the idea was exciting (!), but wanted to discuss it
with Alexei first. This afternoon, he said that if a pediatric
cardiologist said Anastasia is fine, then he can't see any reason to
keep her on the monitor, either.

So, yipee! No more dragging around that monitor! No
more wrestling with it when I change her clothes or her diaper. No more
lugging it around in her stroller, or on my shoulder when I carry her
around the house. No more screaming machine when we turn it off or on,
or when one of the leads comes loose. Exciting, indeed! But also a
little scary. I'm sure I'll be waking up a lot more at night, checking
Anastasia's breathing.

So, the doc has to fill out some paperwork, and then
the company who rents the monitor will call. This will probably take a
few days, but if I'm brave, maybe I'll take Anastasia off the monitor
tonight!

April 21, 2006

I'd hoped to be able to shout out today: WE'VE GONE
WIRELESS! But Alexei nixed the idea. "When the doctor signs the
paperwork, then we'll unhook her," he said. So I'm humoring him.
Still, I find myself eagerly anticipating a wire-free baby!

April 23, 2006

No, we're still not quite wireless.

But, on a positive note, my milk supply is coming up
a little. The Reglan prescription I take in order to maintain that
supply is really starting to bother me, though. It tends to make me
depressed, and now I have nightmares all night. Taking a couple of
tablespoons of flax seed each day seems to help counteract this, but
still, I wonder how long I can continue to take the stuff.

Alexei is still sequestered in the living room with
his cold, and Anastasia and I pretty much spend all day in the nursery
in order to stay away from him. This weekend, I just had to get out,
even though Alexei is reluctant to have Anastasia and me walking around
the neighborhood alone. (Overprotective papa bear, and all that.)

For the first time, I wore Anastasia in her front
carrier facing out, and she was all eyes for everything. No sleeping
this time! Today, after our walk, I put her in the stroller while I did
a little gardening. She was pretty cute, kicking back and putting her
feet up on the tray, as if it were her own little ottoman.

April 24, 2006

The company that rents out the apnea monitor called
this morning; they are coming to pick up their equipment this afternoon!
I'm so excited. Kinda scared, too. Nice timing, though. Anastasia is now
5 months and 1 day, corrected age :)

April 24 (Part II)

Drum roll please! It's official; we now have a
WIRELESS BABY! The medical supply company took the monitor away, so
there's no turning back now! :)

April 26, 2006

Yesterday, a day after she rolled from back to tummy
for the first time, Anastasia had a physical therapy appointment. It
didn't go as well as we'd hoped. "Well, we can rule out the worst forms
of cerebral palsy," the physical therapist said. Rule out the worst?
Worst only?

Turns out, last time the PT saw Anastasia (which was
an extremely brief visit in the middle of a checkup), she'd been quite
concerned because Anastasia's head was still bobbing around. Cerebral
palsy was the first thing the PT wanted to look into. (Since that time,
Anastasia's head is much less prone to bobbing.)

Unfortunately, Anastasia cried the entire hour and a
half we were with the PT, making a good examination of her skills very
difficult. (She began crying when we placed her on the scale; we think
she's associating getting weighed at the doctor's office with getting
painful shots, so next time we'll do the weighing last.) Still, the PT
said Anastasia appeared to be two months behind in her physical
abilities. That, too, threw us through a loop. Anastasia has met all her
milestones, except one: When on her tummy, she doesn't raise her torso
up by getting onto her hands; she gets onto her elbows only. The muscle
weakness, the PT says, is significant on her left side, making her quite
asymmetrical. "Babies are very symmetrical," the PT says. "They don't
favor one side over the other yet."

So the PT gave us a series of exercises to do with
Anastasia at least four or five times a day. We even have to hold our
dear girl differently. No cuddling, at least not for long. We're to hold
Anastasia away from us, so her trunk muscles develop better.

Also disconcerting is the shape of Anastasia's head.
It's beginning to change because she's always laying on her right side.
In back, the right side is a bit more flat than the left side, and in
front, it's more bulgy. So we have head-turning exercises to do, too.

The RN also popped in and asked about Anastasia's
weight. She wasn't thrilled with her slow weight gain (13 lbs. 15 oz.)
and is wondering if we need to up her calories by mixing her formula a
little thicker and feeding her more solids (or trying to!). They even
suggested putting butter in her solid foods, to up the calories; I
didn't think about it until we were home, but that won't work. Butter is
a dairy product, of course...and I've been abstaining from dairy for
months now because it upsets Anastasia's tummy. They also mentioned
possibly doing a barium swallow study for Anastasia's reflux. "We'll see
what her weight is like in two weeks, when she comes back for physical
therapy," the RN said.

Overall, Alexei and I are discouraged. In part,
because we thought Anastasia was doing better, and don't like hearing
that she still could be diagnosed with cerebral palsy. And in part
because things were just beginning to normalize. Anastasia wasn't
fighting feedings (although she can always eat better), and her monitor
was finally gone. We're tired, and were hoping for a reprieve. But we're
trying to look on the positive side. Things could be so much worse, and
at least we can actively take part in helping our daughter through the
PT exercises.

To top it off, Alexei saw a gastroenterologist who
thinks Alexei's reflux has been untreated for so long that his esophagus
is probably pre-cancerous. They will be sticking a tiny camera down his
throat for a better look in a couple of weeks.

Sigh.

This morning, doing physical therapy exercises.
She's supposed to be leaning on her hands, not her elbows, the
lazy girl :)

April 26 (part II)

I've received several emails from people, asking when
Anastasia can get out and about in public. Although RSV season will
probably be over in a month or so, Anastasia still won't be able to go
into large crowds or anywhere anybody is sick. Her lungs are still too
damaged, and a simple cold could still send her to the hospital and back
on a ventilator. With the end of RSV season, though, the risk does go
down. So, no stores for some time, and no being around little kids, who
are often sick.

Also, I want to thank everyone for their kind words
and - especially - their prayers. We can always use your prayers, and
our little girl can especially use them now.

April 27, 2006

Well, I've done a little research on Anastasia's head
tilt (called ) and in my non-medical opinion, I think she has a
relatively mild form of it. I also wonder why nobody mentioned it
sooner, since a baby who was without amniotic fluid for over five weeks
would seem to be a ripe candidate for this problem. But I feel better,
now that I'm more educated about the problem. I think, perhaps, all of
Anastasia's muscle weakness is probably due to my lack of amniotic
fluid.

So, we're doing the physical therapy exercises at
least four times each day, plus (whenever possible) holding her so she
has to use her torso muscles. Anastasia hates it, but seems to tolerate
it better with each session. She hates tummy time the most, and any time
I try to get her to prop herself up on her hands, she cries and cries.
Poor thing.

She always falls fast to sleep right afterwards, and
she seems to be eating better, too. She's slept through the night
several times in a row, and took her first two 6 oz. bottles this
morning.

The county nurse who first suggested physical therapy
called me yesterday and asked if I wanted her to advocate for Early
Intervention services for Anastasia. (This government program rejected
Anastasia a few weeks back, saying she was doing too well to qualify for
their services.) Early Intervention called this morning and said that as
long as they can see the report stating that Anastasia needs physical
therapy, she will qualify. So that's in the works. The bonus is that
Anastasia may be able to see a physical therapist more often...and if
Early Intervention comes to our home, it will save Alexei time off work.
It will also save Anastasia from so much exposure to germs.